patient-reported data

A New Year with Jamie Heywood

  It’s 2014, and it’s a significant year for PatientsLikeMe and our members. Later this year we’ll mark the 10th anniversary of our founding. As we reflect on where we’ve come from and where we’re going, there’s one thing that has never changed—our commitment to make sure your real-world experiences are a central part of improving healthcare.  Changing medicine for the better is a journey. This year, we want all of you to join us on that journey, every step of the way. That’s why we’re starting a new initiative to get even more patient-reported data. Co-founder Jamie Heywood talks about the idea of data donation, and all the good it can do.     Wow, ten years. That’s a long time. What do you think are some of the most significant accomplishments of the last decade? It’s been an amazing journey. We started this site so people, including my brother Stephen, could find information that helps them live better day-to-day and contribute data to research. We wanted to shake medicine up, to make it more about the patient, to help people connect with each other and see what their options were and take control of their health. At the …

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New Efforts Underway to Improve Care for Veterans

With financial support from UCB, the Department of Veterans Affairs and PatientsLikeMe will study patient-reported outcomes. CAMBRIDGE, Mass. — Jan 22, 2013 — Today, the U.S. Department of Veterans Affairs’ Epilepsy Centers of Excellence (ECoE), biopharmaceutical company UCB and health data-sharing website PatientsLikeMe announce a new study to better understand what factors improve health outcomes for veterans with epilepsy.  The ECoE has recently completed a pilot study focused on collecting and sharing real world, patient-reported data on seizure frequency and severity, treatment adherence, patient and physician dialogue and overall quality of life. The study is now open and available to all veterans living with epilepsy at www.poemstudy.org. “This collaborative effort, with partners from government and private industry, provides an exciting opportunity to improve the outcomes of the thousands of veterans with epilepsy. Our work together may also deliver insights into how we can improve the care for anyone with epilepsy,” says study lead and ECoE’s John Hixson , M.D. As part of their initial partnership to help epilepsy patients, which began in 2010, PatientsLikeMe and UCB conducted a study of members of the PatientsLikeMe epilepsy community that showed that people with epilepsy who joined PatientsLikeMe better understood their own seizures and improved adherence to their medications.1,2 …

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A Day in the Life of Health Data and Drug Information Clinical Specialist David Blaser

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our ongoing blog series “A Day in the Life,” which features PatientsLikeMe employees from different departments.  Today we’d like to introduce you to David Blaser, PharmD, a registered pharmacist who decided to trade his white lab coat for the more casual dress of the startup world in early 2011.  Find out what drew him to PatientsLikeMe, how his pharmacy background factors into his work and more. 1.  What led you to join PatientsLikeMe? My journey had a few twists and turns, but now that I’m here, I can’t imagine working anywhere else.  I started studying pharmacy at Northeastern in 2003. Toward the end of my time there, I started to consider the career paths I could take and didn’t find any of the traditional ones particularly compelling. Maybe it was part of being young and naïve, but I continually was disappointed and perplexed by our healthcare system in the US. I felt like there had to be a better way. Then I took a great class called Pharmacoeconomics and Health Outcomes. During this class, you take a medical question (e.g., Should I take drug A or drug …

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A Day in the Life of Health Data and Patient Safety Clinical Specialist Christine Caligtan

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features PatientsLikeMe employees from different departments.  Today we’d like to introduce you to Christine Caligtan, RN, MSN, a registered nurse who has served as our Health Data and Patient Safety Clinical Specialist since May 2011.  Find out what that involves, why she made the switch to the health startup world and much more in our interview. 1.  What’s it like to be a registered nurse at a health startup? I could not be happier as a registered nurse at PatientsLikeMe. It’s the best of both worlds: I get to interact with patients online, and I am satisfying the informatics side of my interests by working the patients’ data and fostering their ability to track and maintain their health with online tools. When I started working as a nurse I never thought my career path would lead me to a health startup. As I encountered different clinical settings and patient experiences, I knew that technology was the key to advancing healthcare.  From that point, I decided I wanted to work in the field of nursing informatics. The first …

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Bringing PatientsLikeMe into the Doctor’s Office: An Interview with Pediatrician Dr. Jim King

You may recall that in July we shared a video about Doctors 2.0 and You, a conference focused on how physicians are using web 2.0 technology.  Today we’d like to present a real-life example of this concept: Dr. Jim King, MSc, MD, FRCPC.  A pediatrician at the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa, Dr. King runs a number of different clinics for rare diseases.  He also serves as the hospital’s Medical Director for Informatics.  Find out how he has used PatientsLikeMe as part of his practice and much more in our interview below. 1. How did PatientsLikeMe come to your attention? We were doing a presentation a number of years ago, in 2006 I guess. We were talking about a number of things, but more specifically the use of mobile technology in healthcare and research as well as personal health records. So we were sort of working up some information and then we came across PatientsLikeMe. We were basically looking at some of the business models around personal health records, specifically around Microsoft Vault and Google Health and those things, and we thought PatientsLikeMe had a little bit of a different spin. 2. As a pediatrician, how have …

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PatientsLikeMe and Merck Establish Health Information Collaboration Focused on Psoriasis

Patient-Based Research Aims to Produce New Insights Into Most Common Autoimmune Disease in U.S. CAMBRIDGE, Mass. — Aug 13, 2012 — PatientsLikeMe announces it has entered into a collaboration with Merck, known as MSD outside the United States and Canada, to evaluate the impact of psoriasis on patients and to inform a novel approach to improving outcomes. “A broader and more human view of psoriasis will help patients and their doctors understand the true nature of the disease,” says Ben Heywood, President and Co-founder of PatientsLikeMe. “We’re excited to collaborate with patients and Merck to uncover insights about the disease that may lead to better approaches for patients managing their condition day-to-day; providers creating care plans; and researchers developing treatments.” According to the National Psoriasis Foundation, psoriasis is a non-contagious, chronic, autoimmune disease that appears on the skin and is associated with other serious health conditions including diabetes, heart disease and depression. It is estimated to affect over 7.5 million people in the United States. “Effective use of health information provides the path forward to patient-centered care and personalized medicine,” said Dr. Sachin H. Jain, Chief Medical Information and Innovation Officer, Merck. “Our collaboration with PatientsLikeMe is an important part of Merck’s strategy to …

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ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital

At PatientsLikeMe we’ve been collecting self-reported data about patients with ALS (PALS) since 2006 – over 5,000 PALS to be exact! ALS is a disease that causes muscle wasting in the arms, legs, head and chest, which leads to problems walking, eating, and even communicating. However, unlike a disease like diabetes where there’s a blood test to tell you exactly how patients are doing, the main outcome measure used to record how PALS are doing is an instrument called the ALS Functional Rating Scale – Revised (ALSFRS-R). It’s a short, 12-item questionnaire that is the “gold standard” tool for clinical trials, but it has one important caveat: it’s normally only completed by clinicians (doctors, nurses, research assistants, etc.). When PALS take part in clinical research studies the questions are read out loud to them and patients are not normally allowed to see their ALSFRS-R scores. When we launched PatientsLikeMe, the concept that we would give patients their very own copy of the ALSFRS-R scale and let PALS see their scores was controversial, and although we’ve gone on to publish a number of studies using the ALSFRS-R and even expanded it for highly impaired patients, the question has always remained: is …

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Behind Every Piece of Data Is a Patient

(This post has been repurposed from an article written by PatientsLikeMe’s Ben Heywood for eyeforpharma’s Patient’s Week 2011.) Real-world, patient-reported data is becoming more important to you, the patient, as well as everyone in healthcare. One source of that data is patient registries. According to the US Department of Health & Human Services’ Agency for Healthcare Research and Quality (AHRQ), a patient registry is “a database of confidential patient information that can be analyzed to understand and compare the outcomes and safety of health care.” Ultimately, the goal of capturing and analyzing this data (shared by multiple sources like hospitals, pharmacies, physicians and patients) is to learn from one another and improve healthcare. Like registries, PatientsLikeMe understands the importance of capturing data in a meaningful, computable and quantifiable way. However, behind every piece of data is a patient. So, in the spirit of putting patients first, we began thinking about the next generation of a patient registry where you benefit in real-time from what you share. It would need to be a situation where you could openly share longitudinal demographic and clinical data about your disease while using online tools to improve your outcomes. It couldn’t be just silos of health data focused on one disease …

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